Apt. 11D

Anxiety Disorders in Kids

One of the great things about this new town is that it has a large, organized PTA for special ed moms. School districts often forget about after school activities and programs for the special ed kids. This PTA makes helps to fund programs and equipment for that population. 

As part of the meeting, the Special Education Director for the town gave a presentation about the district's offerings. She told us how many kids were getting services and where she was noticing shifts. For example, she said that there were less kids getting help for speech therapy this year. She also said that she and her staff were finding a huge jump in the number of kids with anxiety disorders. She was seeing it very young kids in Kindergarten, because the demands on young kids have increased so dramatically. It was also become apparent in the high school, as the number of kids who were cutting had jumped. 

Autism in the News

There are two articles in the New York Times about the new definition of autism. One is from a writer who was misdiagnosed with Asperger's Syndrome as a teenager. Another is from a pyschiatrist who also complains about the overdiagnosis of Asperger's. 

From a parent's perspective, check out my article in the Atlantic.

In terms of functionality, autism is a spectrum disorder. Some are eventually able to function in normal society. They'll hold down jobs and get married. They are able to function by learning how to compensate for their deficits and by finding employment that takes advantage of the unique strengths. There are others who are so severely affected that they will always need someone to care for them. 

However, autism isn't always a spectrum disorder. One kid can have a very high cognitive level, but struggle with speech acquisition. Another kid can be a fluent speaker at two, but be overwhelmed by stimulation and by a compulsion to stick to routine. One kid can have a photographic memory, and another may be especially good at building things. Sometimes it is incredibly difficult to find commonalities in these kids. 

As autism parents, we must all stick together, because all these kids need help from family, schools, and therapists to help with speech and social interactions or with overcoming OCD tics or with controlling their behavior. They need to have their gifts nurtured. 

For every one kid who is misdiagnosed with autism, there are hundreds of thousands of autistic kids who are undiagnosed. Sometimes, they are purposely misdiagnosed from school districts that do not want to pay for therapy. As any parent of an autistic child knows, that label is the key to getting the help. There is no therapy or special schools for kids who live in the grey area of No Label. 

The new definition of autism is a VERY BAD thing for parents of high functioning autism. While I know that the scientific community's motives in the creating the new definition of autism are pure and based on an interest in science, others are not so convinced. Some parents have whispered to me that this new definition is a plot by the insurance companies who don't want to pay for services any more. I don't believe that, but I do believe that autism parents are stretched to their limit and that these changes will make their lives much more difficult. 

The Ritalin Solution

In yesterday's Times, L. Alan Sroufe argues that we are over medicating our kids with Ritalin and other ADD drugs. He argues that these drugs have serious side effects and that the concentration benefits wear off over time. (At one point in the article, he says the side affects are serious and permanent, but later claims that the side affects are temporary. Confused.) He said that ADD  is misunderstood. It isn't a neurological problem, but a behavior problems that is caused by bad parenting. 

Behavior problems in children have many possible sources. Among them are family stresses like domestic violence, lack of social support from friends or relatives, chaotic living situations, including frequent moves, and, especially, patterns of parental intrusiveness that involve stimulation for which the baby is not prepared. For example, a 6-month-old baby is playing, and the parent picks it up quickly from behind and plunges it in the bath. Or a 3-year-old is becoming frustrated in solving a problem, and a parent taunts or ridicules. Such practices excessively stimulate and also compromise the child’s developing capacity for self-regulation.

At this moment, I'm drumming my fingers on my desk, while I try to decide how much personal information that I should reveal. Answer: not much. Let's just say that my views on the topic are based on some family experiences,  conversations with neurologists and parents, and whatever scholarly articles squeak through the paywall. 

Attention problems aren't just because of bad parenting. That's a ludicrous, old fashioned, and annoying notion. Attention problems are clearly neurological. You'll see the gene passed down from parent to child and you'll see differences among children within one family. It seems highly unlike that a mom was in the habit of plunging Kid #1 in a tub of water, but not Kid #2. The Bad Parent theory fails to explain ADD.  

While Sroufe's Bad Parent theory makes me vomit, I am very sympathetic to his concern about the over medication of kids. 

I think there is a rather large population of kids who have trouble concentrating in school. They are smart, wonderful kids, but they simply cannot sit still in a desk for seven hours a day, while a teacher talks about the GDP of Peru. With the rise of high stakes testing, there is even more pressure on schools to reign in these daydreamers and force them to the concentrate. Rather than creating learning environments that will suit the daydreamers, schools are growing less and less tolerant of them. 

To meet the demands for high test scores, schools are pressuring parents to medicate the kids. (I have lots of anecdotal stories here, but I'm not telling those stories right now. ) It is much, much cheaper to medicate a kid, then provide him or her with a classroom aide. These medications do have temporary side affects that are rather gruesome. Some cause the kid to pull out hair or pick at his skin until it bleeds. 

The problem is that these drugs work to a certain extent. They do help the kid get through a boring day at school. I just wish there was a drug to give the schools that would help them be less boring. 

Life in a Special Family

Yesterday morning, as Steve was putting his coat on to leave for work, he carefully explained to Ian that a woman's breasts should not be called "bongo drums." Instead, they should be very respectfully referred to as "head lights" or "hooters." 

Our family life is very different from other families, because we have a kid who is very different from other kids. We adore our kid and love, love, love his differences. His artwork blows my mind. (This is his concept for the best video arcade in the whole world.) Even the parts of him that are considered disabilities, such as his unusual use of language, cracks us up. If there was an operation that would make him average, I probably wouldn't do it. I like him the way that he is. 

However, there's a whole lot that goes along with having "a different kid." That stuff I could do without. 

On Tuesday, I mixed up sandwiches in the lunch boxes. Jonah got Ian's plain ham sandwich. Ian got Jonah's sandwich with the lettuce and the mustard. At 9 am, I received a call from school informing me about my mistake. The school doesn't have a cafeteria, and Ian couldn't go hungry. I drove to McDonald's, got a happy meal, dropped it off at the school, then drove home. (2 hours) I threw in a load of laundry and bought food for dinner. (40 minutes.) Then I drove back to Ian's school, waited in the cold, texted Jonah to make sure that he got home alright, drove Ian to speech therapy, observed the new therapist (terrible), drove home (4 hours). That's a full time job. 

On Wednesday, I traded phone calls with Ian's case worker. After lots of thought, I decided to dump the new therapist. After school, he had special swim classes at the Y. Jonah worked as a volunteer. I networked with other moms and scored a playdate for Ian. On Thursday, I dodged out of a photography class to talk with Ian's case worker for 20 minutes. I requested that the school district provide in-home speech therapy and a social skills class, so my kid wouldn't call a woman's breasts "bongo drums" in public. Then she told me that we had to assemble a file to present to the Board of Ed in order to get these services. The first thing she needed from me was a three page written justification. It will take months to get approval. In the meantime, I need to find a better therapist and one that isn't 1-1/2 hours away from the house. 

I really want to be one those "free-range" moms. One that lets her kids out the backdoor of the house and then ignores them until sunset. I would even not mind being a "tiger mom" who berates her kid until she gets straight As and then basks in the glory of producing the perfect child. Instead, I have to be a warrior mom, who has to combat bureaucracy with nerves of steel and drive like a trucker (a trucker who listens to NPR) all over creation for services. 

The trouble is that all this warrior mom stuff is exhausting. I hit a wall a few weeks ago and I realized that I needed to do a better job taking care of myself. More photography classes for me in the future! 

The Limits of Charity

Many conservative argue that instead of government programs for the needy, we should let charities and volunteer organizations provide those services. Let's support churches and local groups who operate soup kitchens and reading programs. Especially around the holidays, we see volunteer groups at their best, ringing bells outside the malls and collecting toys at high schools. It would seem that there is already a vast infrastructure of help for the poor and the sick. 

The reality is that these groups are struggling and only scratch the surface of need. 

The food kitchen that my dad runs is operated by a bunch of 80 year old men. They need help stocking shelves and driving the van to pick up food and toys from local schools. They need younger bodies to do the physical labor involved with the job, and they need those bodies during daylight hours. Nobody is there. 

People are willing to help the needy and the sick theoretically, but they don't want to get their hands dirty. My mom is helping take care of dying woman. People who are dying and in severe pain can be extreme assholes. All of her former friends have deserted her, and only my mom remains to make sure the bills are paid and the woman gets her pain medicine. 

I've often wondered why thousands attend Right to Life marchs, but there are no volunteers for special needs schools or at inner-city schools. Is it because it is easier to support a dead fetus than a 8 year old with behavior problems? Yes.

When people volunteer their time, they want some reward. They aren't expected a paycheck, but they want that warm feeling of doing a good job. A smile and a hug from a photogenic child or a kind wrinkled face grandma. It's very hard to help people who are ugly, disturbed, angry, and dirty. 

We need government support, because there's a limit to charity. There are not enough people who are willing to do the dirty work of stocking shelves during inconvenient times, comforting an old woman with dementia, talking to a sad 9 year old with behavior problems. Simply writing a check for groups that do good deeds isn't enough. They need people who are willing to roll up their sleeves and do a job with no thanks. Because those people will never appear, government has to step in. 

 

UPDATE:  As part of my after school marathon, I end up spending a lot of time talking to moms of children with special needs. These kids' needs are in a whole different league than my kids' needs. Think smearing poo on the wall type of needs. Think never ever sleeping type of needs.

Because these kids are high needs, the families have very high needs. The parents are burned out, stressed, exhausted, lonely, depressed, worried, and often times, financially strung out. There is absolutely no one helping these people. No one. There are no church groups helping them. In fact, so many of these families have been run out of their churches, because the other parishioners don't want to deal with those kids. There are no neighborhood welcome wagons handing out casseroles. These women cling to each other sharing their own private hells.

The Sybil Myth

Via Andrew Sullivan, it appears the Multiple Personality Disorder or Disassociative Identity Disorder may not actually be a psychiatric ailment. It became popularized at a time when society wanted a way to repress women who were beginning to show independence. 

 

The Genetic Blues and Autism

Wendy sent me a link to an interesting post on Echidne of the Snakes, which critiqued Simon Baron-Cohen's theory that assortive mating has led to the rise in autism.

In a nutshell, Baron-Cohen believes that women who have the autism gene find men with the gene in the workplace, and they make babies. They find each other in the halls of the university or in the lunch room at Microsoft. In the past, smart women were not marriage material. Hell, the nerdy type of guys who are making a bazillion dollars at Mircrosoft were not marriage material back then either. Now, not only are smart, nerdy people rich, but they are hanging out together and making babies. Babies who have problems. 

Echnide finds this theory full of sexist assumptions and has an underlying criticism of smart, career driven women. I'm not sure about that, but I also don't like where this latest trend in genetic research on autism. 

I'm quite sure that autism is a genetic disability. It may have environmental triggers, but nobody has really identified what those triggers might be. But beyond that, nobody knows what's going on. The scientists can't identify which genes are the autistic genes, because there are probably different genes or different combination of genes that lead to autism. Actually, autism may not be one particular thing at all. 

Baron-Cohen came up with a lame test to determine if you have a systemizing type of mind. Systemizer people carry the gene for autism, but don't have the disability themselves, he believes. 

This test is silly and horrible, not because it implies some criticism of career women. It's silly and horrible, because it makes parents feel bad about themselves. 

A couple of weeks ago, some friends came over for a visit with a bottle of red red wine in one hand and mixers for margaritas in the other hand. The most social, fun-loving couple in the world. They love to tailgate at Jets games and go deep sea fishing with their gang. They also have two boys with autism. The mom is deeply concerned that her bad gene pool harmed her kids. 

Baron-Cohen's test is a witch hunt for autism. It doesn't provide any useful information. Should people with systemizing personalities not reproduce? It piles guilt and shame on parents. So, I'm halfway with Echnide on her criticism of Baron-Cohen. 

Sensitive

Alternative Medicine and Autism

Last week, my friend, Cynthia, told me that she was considering getting B12 shots for her son, who has ADHD. She wanted to know what I thought about it. Since I just spent three hours reading a Jenny McCarthy book, it's a good time to blog about alternative medicine and autism. (Surprisingly, McCarthy's book did not suck.)

Some parents and doctors believe that B12 shots, a gluten-free diet, and other supplements help to minimize the affects of autism and other neurological differences. They believe that these children have unique digestive systems that cannot process certain foods and that they need supplements to help regulate their systems. I know some very smart, responsible parents who swear by the results in their children. While I respect these friends, I am a doubter. I'm not an angry doubter, as I am about the whole vaccination vacation thing. Still, I am a doubter. 

There is not one shred of scientific evidence that any of these alternative treatments work. Some believe that all scientists are in the pocket of the medical-pharmaceutical industry. I do not. 

It is very difficult as a parent to objectively evaluate the benefits of a treatment or therapy, because your sample size is one. You will never know if this treatment is responsible for the spike in your child's progress, when you are also doing two or three other therapies at the same time. The spike in progress could also just be an old-fashioned growth spurt. 

I am quite sure that if you stop eating pizza and pasta for dinner every night, you'll feel better and so will your disabled child. But that doesn't mean that completely removing gluten from your diet will make you feel like Superman. 

There may be a subset of disabled kids who have milk allergies or have celiac disease. For that group, a change of diet makes sense, but everyone else can benefit from moderation. 

This alternative medicine craze can sometimes push me from indifference to anger, when I think about the pseudo-professionals who are preying on the grief and helplessness of parents. I also worry that these treatments drain the energy and money of parents, when there are real exercises that can help the child. 

What makes a difference? What can parents do to help their neurologically atypical kids? It's very boring, time intensive stuff. You have to talk to your kid all the time. And when you get tired of it, you have to hire someone to step in and help. You have to limit time on the computer. They need to be outdoors, getting exercise. They need to eat vegetables and fruit. They need to be put in social situations. And they need to be appreciated for their differences. 

60 Minutes - Apps for Autism

 

Quite a number of my friends have sent me a link to Sunday's 60 Minutes special, "Apps for Autism." Leslie Stahl explains that iPads help severely affected communicate. They've had Assistive Communication Devices for a while, but the iPad is cheaper and, maybe, more fun. 

I can't think of a particular app on the iPad that would work on Ian's weaknesses. There aren't apps that make a kid with sensory issues put on long pants. (He's in shorts today.) But I think that he definitely responds well to visual information, and his teacher could be supplementing her lessons with technology a lot more. He's learning geometry in school right  - right angles, perpendicular, and all that. Geometry lessons could be entirely done on the dusty smart board in the front of the classroom. Visual information definitely helps supplement his understanding of material, since he still has weird and huge gaps in his vocabulary.

Computer programs also help him to tap into his strengths in a way that school can't. He's building amazing structures in a program called Minecraft.

It also piques his interest in topics that translate into off-screen action. He loves a computer website called Poptropica. Because of that website, we're now reading two chapters of Magic Tree House books every night.